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talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.
Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.
Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.
I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.
We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.
So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
September 17 2009, 06:18:35 UTC 7 years ago
I have bad migraines(sometimes with auras...oooh ahhhhh), I'm a borderline asthmatic(I don't get a puffer) and I have arthritis(had it for years and I haven't hit 30 yet). Also, I don't know what it is yet but on occasion, my body and mind get extremely exhausted all of a sudden and I lose consciousness for awhile. Thanks to the barest hint of a warning, I've usually been able to get into some sort of safe position in time. Not quite invisible when it happens but because I'm usually on the ball, people think I'm just napping or dozing off. Because of any one of those or a combination of them on different occasions, I've had people call me out for just being lazy, making excuses, exaggerating, making things up, not getting enough sleep, being rude and outright lying. It annoys me to no end and usually makes me want to yell at them and/or cause bodily harm.
On an amusing note, several years ago, I lost consciousness in a drawing class. Because it was an early morning course, I missed the warning signs and (I'm told) my head just dropped on my drawing mid-charcoal stroke. It scared the crap out of my prof and he forced me to go take a coffee break despite my many reassurances that I was fine and didn't need(what's caffeine gonna do?) or want one. He was all wide-eyed and practically hovering when he walked me to the door. *snarf* :)
September 18 2009, 15:40:01 UTC 7 years ago